Young woman from Margate's appeal to fund surgery after suffering pain every time she eats
05:00, 03 December 2022
updated: 09:22, 05 December 2022
A 25-year-old former "foodie" has told how she now suffers excruciating pain every time she eats.
Kira Haines, from Margate, endures severe pain due to various rare health conditions, which started when she was a teenager and led to her losing two stone in the space of a year.
Now, after 10 years of debilitating agony all over her body, she is fundraising for surgery overseas to help her lead a normal life.
Kira told KentOnline how her conditions affect her day-to-day life, including having to give up the job she "loved" working on the checkouts at Sainsbury's at Westwood Cross.
"I'm always breathless," she said.
"I've been to A&E twice this year for severe chest pain."
Kira described herself as a "foodie" before her pain started when she was just 15, adding: "I loved my food".
Her GoFundMe, set up by her sister Fern last summer, says: "When Kira was a toddler, she was chubby and enjoyed her food.
"As she got older, eating food started to become painful and has now become so severe she has been hospitalised on many occasions, whilst having numerous tests and procedures to figure out what was causing her pain."
Now, Kira can only eat very plain foods like chicken, rice and fish.
"If I was to eat anything else I would be running to the toilet and have to take pain medication," Kira said.
"Sometimes I can't even finish half a bowl of rice.
"Over the years I've cut out so many foods like dairy and wheat."
Her inability to eat normally causes massive problems for Kira, but she says her pain has become "normal" to her now.
"It's a social thing too," she continued. "At home with my family I can't eat the same meals with them. I can't go out for dinner with friends or family.
"I get pain even with plain foods."
One of her conditions is Pectus Excavatum, a sinking of the breastbone.
Kira's has progressed so badly, that her chest is 4cm away from her spine, moving and crushing her organs.
"I started going to hospital for Pectus at 13 or 14, but doctors told me it was just cosmetic and didn't really do any tests," Kira recalled.
"We just listened to the doctors and thought it would be okay."
However, her issues with food began not long after, when she developed severe stomach pains, gastronomical issues and was rushed to hospital with sepsis.
Doctors initially diagnosed Kira with Crohns disease, but her condition continued to worsen, leading to a lengthy stay in hospital with a feeding tube.
"It was touch and go as to whether Kira would actually pull through," says her sister on the fundraising page.
After more tests in hospital, doctors concluded that she had irritable bowel syndrome (IBS).
But she says she "knew that wasn't right," adding: "I felt abandoned".
Her family did their own research and paid to see different specialists because she felt "doctors weren't listening to my experience or my pain".
After a friend told Kira about a compression syndrome she had heard about, tests with specialists revealed she had Nutcracker Syndrome and Median Arcuate Ligament Syndrome (MALS).
Nutcracker syndrome is the compression of the left renal kidney vein, causing a lack of blood flow to one kidney and therefore immense pain.
MALS is also a compression, but of the celiac nerve and the celiac artery, which delivers blood to the stomach and liver. This results in upper abdominal pain, frequently made worse with eating, causing weight loss, nausea and vomiting.
It affects one in 50,000 people, and is most common in young women.
Kira also suffers from May Thurner Syndrome, a similar condition, but the narrowing of the left iliac vein in the pelvis. For Kira, this has meant the trapped blood has built up pressure and forced new veins through her pelvis, causing the blood to pool in her body.
Kira had surgery in November 2021 for her MALS, which meant she could eat a little bit more, and put on some weight.
However, the surgery unfortunately made her other symptoms worse, and she now desperately needs surgery to remove or adjust her kidney to solve the chronic pain the Nutcracker Syndrome causes, and Pectus surgery to correct her sinking chest, which is crushing her heart and lungs.
She says the NHS will not move forward with any surgery or even confirm the diagnosis, due to the rarity of Nutcracker syndrome and the lack of knowledge in Britain.
Pectus surgery is no longer available on the NHS in England, and the UK also does not allow kidney removal for Nutcracker syndrome, which has the highest success rates.
Therefore, the family are raising money for Kira to have these treatments privately, with the kidney adjustment or transplant having to be done in America.
Pectus surgery costs about £15,000 depending on the patient, and if tests show her remaining kidney couldn't do well without the other, she will have to pay out even more.
"If my other kidney wont be okay on its own we will have to look at the other option of moving it over but I don't think that's within our capabilities," she said.
"It would be so expensive."
The fundraising effort is still in full swing and is going well.
"We've got a Christmas fundraiser going on at the moment and have raised £250 from it so far," she said.
"Right now I'm waiting for tests in the UK to see if I can do the kidney transplant. But if they won't do them I'll have to travel to the US for them.
"Things are on hold till then."
In the meantime, Kira's family are left to worry about her future.
On the fundraiser, Fern said: "We are worried and concerned that if she does not get the necessary surgery soon her health will continue to deteriorate and lead to more health issues and poorer quality of life."